Announcing the Ependymoma Fund for Research and Education

— Categories: Press Release     Posted on December 17, 2019

The CERN Foundation and the National Brain Tumor Society have joined forces to help people with ependymoma and advance ependymoma research toward the development of new and better treatments through the creation of the Ependymoma Fund for Research and Education.

With CERN’s focus and expertise in ependymoma, the National Brain Tumor Society’s (NBTS) broad platform for advocacy, and shared commitment to collaborative, treatment-focused research, we are leveraging the strengths of each organization to accelerate progress for patients and their families. The Ependymoma Fund creates a centralized landing place where all ependymoma stakeholders can join together and support research, advocacy, and patient education initiatives for this rare disease.

“The community should be proud of what we have been able to accomplish together over the past 13 years as these efforts are almost unheard of in the orphan disease space,” shares Kimberly Wallgren, President of the CERN Foundation. “CERN is extremely unique and has made major contributions to the neuro-oncology field and continues to make a positive impact in the ependymoma community. This partnership with the NBTS and the development of the Ependymoma Fund is a great opportunity for us moving forward and for the future of CERN. Our collaboration will help ensure the long-term sustainability of ependymoma-specific investigation, advocacy, support, and outreach.”

Ependymoma is a rare brain and spinal cord tumor that impacts both adults and children. For over a decade, the CERN Foundation has been at the forefront of the fight against ependymoma, supporting scientific research, clinical trials, outcomes studies, and education efforts. The work of the CERN Foundation has contributed to a vastly improved understanding of the genetic make-up and biology of ependymoma. Today, this knowledge is helping scientists around the world develop new therapies, but there is still a need for more research to improve outcomes and quality of life for those living with this disease.

The NBTS invests in, mobilizes, and unites the brain tumor community to discover a cure, deliver effective treatments, and advocate for patients and care partners. The NBTS is the largest patient advocacy non-profit solely dedicated to the brain tumor community and a leading thought leader in the neuro-oncology field. “Collaboration is important to the NBTS and the development of the Ependymoma Fund brings us closer together to help patients with an unmet medical need,” shares David Arons, Chief Executive Officer of the NBTS and CERN Advisor.


If you would prefer to donate by mail, please use this donation form and select the "Ependymoma Research and Education Fund with CERN" for the area of designation. All donations should be sent to National Brain Tumor Society, 55 Chapel Street, Suite 006, Newton, MA 02458.

Donations to the Ependymoma Fund will be made on the NBTS website and used to support research efforts that will benefit both ependymoma patients and research through CERN. Emphasis will be placed on CERN’s historical model of supporting work that translates basic science into clinical practice. The Fund will also address overcoming barriers to clinical trial accrual and the development of new clinical studies for ependymoma patients. Additional funds will be used to support educational efforts through print, media, and awareness events. The new collaborative Ependymoma Fund will continue CERN’s practice and tradition of involving and collaborating with other scientists, medical providers, foundations and supporters of ependymoma research.

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